Solution searching (and not finding one)

I’m not wholly sure how to begin this one.

‘Oh for fuck’s sake’ seemed appropriate but, until now, this blogger hasn’t felt the need to swear.

But.

For fuck’s sake.

Here we are, this family of mine, stitched and held together by a variety of care providers and services and, the one we need most, beloved respite, is proving beyond elusive.

We have been bruised, my husband and I, by having this most basic of requests wrapped up in long meetings and long delayed reassessments of our needs. These are happening currently. It includes: three one hour sessions with our social worker where she sits and talks to me/ Big/ my husband and I about our life. She has to dig it up, from the start, with questions which I no longer know how to answer (What was he like – developmentally – at one? I really don’t know. You try remembering to put a marker in your son’s glacially moving sands) to ones which I don’t want to answer (how did that affect your daughter?). Nothing is private. The more information we hand over, the bigger the case notes become but, really, after every meeting I am wrung out.

There are also three sessions between her assistant and Small where he can play with him, get to know him and see what he’s like – as a person. Whilst this is ostensibly for Small’s benefit this is really to feed back into the Big Report.

And the stark truth of our situation is this:
Our current respite Carer does not want a bed that would accommodate Small in her house as she feels it wouldn’t work for the older children she cares for. This is totally her prerogative and we respect that but, as a result, our county is respite-free.

You’d think, across the entire county, not to mention the two next door, that someone would be either able to accommodate him or could be trained in order to do so. Apparently not. And when one of those involved in your son’s care says: have you considered taking legal advise? You know you’re in trouble.

We didn’t think we were asking for much but apparently we were asking for the world. I don’t want to fight, I don’t have the energy to fight and, as one other blogger so eloquently put it – really, where did this fighting talk come from?* I just want someone to not only acknowledge the problem, but work with us to find a solution. I come back to the same argument each time. Surely helping us – and all the families like us – is cheaper than taking those children into care? Why is it that social care continues to fire fight with no time to plan? How have we got here?

*http://premmeditations.wordpress.com/2014/10/20/fighting-talk/

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An open letter…

To all of you who have input to our lives. Today though this is mainly for you in Social Services.

You cannot take away our respite.  We will fall apart.  You know this.

Small has, unsurprisingly in my opinion, been making physical developmental bounds.  Every single department: Physio, occupational therapy, visual impairment, nursery, now school… they have – you have – all been encouraging this.  He is not completely the sedentary chap he once was.  Give him something to pull up on – he will have a go.  This is good, everyone says, this is great progress they all cheer but, oops, we’ve just risk assessed his respite carers home and I’m sorry that’s suddenly a no go.  Have a good weekend!

Wait, sorry, what?

How could we have guessed his trajectory? you say.

No, no, this is not acceptable. Why don’t you plan for this? Why is there not a plan mapped out for your children? That way you can tweak it, but not crisis manage. How is this more efficient?

That meeting you had – why weren’t we told? why weren’t we invited? Why have we not sat down to find a solution?  Why did you just call the house, post-meeting, post-decision made and casually inform my husband?  Why did he have to press home to you, as firmly as he could, quite what this 30-minutes-in-the-making decision would do to our family?  Why did you make him have to find the right time to tell me?  To let me come home from work, put my children to bed and tell me, so that I dissolved in tears only in front of him? What good does that do to anyone?

In safe-guarding our son, deeming his bed no longer suitable for his needs – and staying the right side of health and safety in your tick box world – you do not safe guard our family.  You do not safe-guard our life.  What breaks me more, is that this should not be news to you, we have been here before.  Through increasing our respite provision last year, you saved out family from imploding.  I sometimes don’t think you saw how on the edge we were.  Respite gives us an even keel.  It gives us a valve to catch some normality. There are so many reasons that our respite is a necessity, not a luxury and I have posted on this before.  We spend time with Big, we spend time with our friends, our minds are able to stop worrying about Small and just relax… wander. 

Most of all: for that night that Small is away I sleep peacefully.  Without stress.  My nerves are not stretched that he may wake up, may shout, may need to be got up, tended to at 2 in the morning, that he may wake Big and ruin her day at school, that he may render me incapable to work through lack of sleep.   Continual ground down lack of sleep.  Often he doesn’t wake at all but every noise, every mumble in his sleep springs my mind awake. Stretches it to awake unrestfulness.  Knowing respite is coming, I can keep going.  Knowing I am trapped in this box, I’m not sure I can.

We have had to explain – yet again – that if you do not come to us with a solution you may have to have him. This is not a solution I even wish to countenance – and I think you rely on this – the idea of Small not being here, not being part of our life, ever-growing challenge that he is – is not an idea I can look at head on. It makes my heart contract. It makes my eyes water. For you know that we love him. But we need space to be kind to ourselves too. And this is something that every parent needs.

We are asking for some joined up, more holistic thinking. It cannot just be about the child. The child can be in the centre of the circle, but without attending to those who keep him there, he will fall away. Please don’t hide behind lists, phone calls unanswered. We have better things to do than have endless meetings with you too. We just want to function as a family. Help us to help you. Help us to help you keep him from being one more statistic in the wrong end of year column.

Think outside that box.

Tally up the cost of the bed he needs versus the cost of your having to take on his whole care package. Then come to us and help.

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Caring about carers

I am a carer. Not just a parent, a carer. I know this. I know that all I do for Small – get him up (because he can’t get up himself), change his nappy (because he is still in them and won’t be coming out any time soon), get him dressed (because he can’t do this himself), take him down for breakfast (because he cannot walk), strap him in his highchair (because he doesn’t have enough sense of danger not to know that leaning out of it at a ninety degree angle might hurt him), feed him breakfast (because he can’t dig into his weetabix with his spoon)… you get the idea… is way above and beyond what I should be doing for a boy who is 4 next month. (4? I know..) And yet I do it, because it is what he needs to get through the every day and most times, I don’t think about it, it’s just what we do. But I recognise the extra strain it places on our life. The physical strain it puts on my body and the strain it puts on our day in terms of time it takes to get places, and the places and events that we can and cannot access. Picnic in the park? Thank you very much. Lunch in a cafe down a steep cobbled street? Thanks, but we’ll pass.

This is why I am so grateful to the other carers in our life who help to take that strain.

To the nursery workers who sit with him to make sure he interacts with activities as much as he can, who get him outside to enjoy the fresh air and the sunshine and who slowly, slowly makes sure he eats. Small loves loves his food, it just can take a mind-numbing while to get it in.

I am grateful to our initial respite worker who recognised that I was on my knees, could not see a way through my life and just took Small overnight, let me sleep, uninterrupted, and find a way to get all our lives back on track. Every other week she took him into her home, made him a part of her family. It was clear how much they enjoyed having him and clear how much he enjoyed being there. Society sees our children with disabilities as a bit of an irritating burden sometimes I think, but Small gives so much back in his laughs, and his cuddles and his enjoyment of just being In The Room (as someone so bluntly, but accurately, put it: ‘he’s a lot more ‘here’ isn’t he?’ Yes, yes he is…).

I am grateful to our current respite worker, who has taken him on, got to know him, worked with us to get to know who he is… so I can sleep easy knowing that he is safe, and cared for. And when he is away my head has time to empty out. I can hear quiet. So there is room to fill it up once more when he returns.

I understand that all these wonderful people do this as a job, they are paid. But I cannot believe anyone would put themselves into a caring role if they did not care. I see them go the extra mile and I know that they do. They care.

There is a man walks down out street… he’s about 40, I think. Every day he is ‘walked’ – no better word – twice a day by people who I assume must be his carers. He walks with an awkward gait, makes guttural noises as he walks and wears the helmet of someone who fits, or faints, for no reason. Every day, come rain or shine, off they go, round the park. This could be my son in 40 years time.

When I am dead and gone I hope, I so hope, that there are still people around who want to be Small’s carers, who will take him out, walk him, bring him out into the open to be part of the world. His sister will not be able – and should not have to – deal with it all by herself. This is what our ‘big’ society is for. This is what makes us human – the connections we make with, and the support we give to – other people. Otherwise, why are we here?

Some just need it more than most.

Next week is #CarersWeek. Shout it out, support it. These people, these incredibly people who do it through necessity or through vocation, they’re worth it.

You can find more information on Carers Week here: http://www.carersweek.org/

Leaving the Smalls…

Ssh, listen, can you hear that? It’s the sound of plane tickets being booked.

Many many years ago my father, of Antipodean extraction, decided he’d had enough of the English weather and skipped off back to the country of his birth leaving my brother and I… a little bereft. I’m not sure Dad ever got it, why we felt we were being abandoned. But you’re grown up, his raised eyebrows seemed to say, you don’t really need me anymore. And the logical, 20-something side of my brain understood this, recognised this but still, you want your parents to be close, to be accessible in times of need – whether good or bad – and we lost this.

He has come back – he came for my brother’s wedding, again shortly after Big was born and again when she was 3. He has never met Small. We have visited too, but with young children for both of us, not to mention the huge expense of shipping a family of 4 by plane, and completely ignoring the fact that I am too absolutely-no-way scared to fly with Small, we haven’t seen him for 4 years. This is a long time. He’s now passed the 80 mark and, you know, ‘not getting any younger’. It’s time.

I am both exhilarated and scared out of my mind to the point of denial. This is not because I am frightened to fly. It is ‘freedom, adventure!’ versus ‘I am scared to leave my children’.

No. I am scared to leave Small.

He and I, we work in our little love bubble of two. It’s a funny world he and I inhabit, but it works and the other people in our lives, well, they fit into it, know their roles, but Small and I we are the lead actors. Our household broke into me and Small, OH and Big when Small when was born which I think is the usual order of things. When Small turned out to be… well, not what we’d anticipated, those teams never broke up.

I have never left him – either of them – for this long.

So, now, with enforced separation… I have to plan a childcare routine that will allow many, many things to happen. Big and Small still have to be got to school and nursery respectively. OH still needs to be able to work 5 days a week and these I think will be fine. But it’s the little things that I as me – mother, main carer, person-who-is-just-better-organised – do as a matter of course that now have to happen without me. Forms will need filling in, lunches will need making, clothes will need ironing… and so I am drafting in the big guns. Two lots of respite, two lots of parents will be on hand to help OH as he currently stands there trilling ‘La, la la’, with his fingers in his ears whenever I mention it.

Whilst I load up the Kindle and buy a new swimming costume. Well, it would be rude not to enjoy it a little, wouldn’t it?

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All change… again…

I don’t know if I have always hated change. I like to think that in my younger, more carefree days, I was open to doing things on a whim, dropping everything at the sound of something fun, looking forward to something different…. I’m not sure though.

I do know that having had Big, and certainly since having Small, OH and I have revelled, thrived on routine. We like to know what’s happening, and on what day, well in advance of its advent. Woe betide any – any – new thing that rears its head.

And yet change is coming. I see it coming, I have time to plan for it, yet I cannot look it in the eye.

Respite.

I love our current set up. Every other Sunday Small goes off – bag packed, buggy folded – to stay overnight with his carer. Here is what I like about her:
– She is lovely
– Her family is lovely and they are clearly very fond of Small. Her two boys are older and Small adores them.
– They do such nice things together. They go swimming, or to feed the ducks, see the animals in the nature park. Sometimes, they visit her mum, who is local, and she has a dog. Small loves dogs. He thinks they’re hilarious.
– We know her.

But Small, pulling to sitting though he is, still has to be carried about from place to place, and weighing in at 17kg of boy, he’s not exactly light. As his parents, we are happy to carry him, happy to risk our backs, our knees, our ankles as we are just not ready to allow hoists into our house. We hope (and hope is something we haven’t allowed ourselves to do for a long long time) that in a year or so he will weight bear enough to transfer himself from bed to chair to car. But we cannot ask someone else to do this, to risk their health for our boy, and Pam has always been clear that she doesn’t want equipment in her house.

So back to Social Services we go. They have found someone who they think will be able to look after Small, although she is half an hour away. Half an hour – down country roads. She will have the right equipment in her house, her car can accommodate Small’s new buggy. I am meeting her this week. And good God the mess of emotions. Will I like her? Will she be right for Small? What will they do together? Will she love him, take good care of him, comfort him when he cries? Will he be ok sleeping here, in this house, without anyone he knows? Am I allowed to say no, this person is not right?

This ought to be a positive. We are hopefully finding someone with whom we can build a relationship for a long time. Someone who will be able to provide our much-needed respite for years to come, without the need for change again. But we fear change, especially in relation to our children, and this is the biggest change we have had to face so far.

Reasons to be cheerful, 123

They don’t happen very often, do they? Those moments where you think Ooh, everything is…ok?

But right now, I am having one and, in the interests of keeping myself sane when everything falls over again, I feel the need to mark it, to note it, to say here, here all was well.

There is a feeling of blossoming at our home. It may well have something to do with the sunshine, which just makes the world feel better doesn’t it? But there’s more to it than that I think. Small is making strides in his development (and when I say strides, you understand that I mean glacial, blink-and-you’ll-miss-them if these were out in the normal world, strides?). He is making beautiful babbly sounds. Anything that delights him is a d-d-d-d-d-doi-doi-doi-doi. Equally, he will show off his true consonant talents to the nearest packet of wipes – they are a rapt audience. As are we. I cannot hear enough of it.

He is weight bearing. Just for a few seconds, hanging on to the laundry basket, or his Daddy bouncing him across the kitchen floor, but he is doing it. When we encourage him to take a step, he’s not resistant, so we encourage and encourage and encourage in the hope that this goes in. He has stopped indiscriminately lurching when we carry him. Or when he does, he thinks it’s funny, whereas previously he was purely looking for his safe space. He can See More. No doubt. He is becoming more aware of noises, where they come from and What Are They? He can drink from his sippy cup without the lid. It’s the messiest thing you ever saw as he will drink it, then flap in delight and throw the water Everywhere. But it is a beginning. This achievement is pure nursery, not us. I Love Nursery and their overwhelming positive belief in Small.

Our extension is finally begun. Where right now we only have one room on the ground floor that is liveable in, by the autumn we will have a clear run through for kitchen, dining room, wet room. Wet room. Because Small’s room is going downstairs. Slight cloud here as the lounge we had pictured in our forever house is going to have to be somehow crowbarred upstairs… but this is small potatoes to the ease with which having Small on one level will bring. My back, ankles and knees will live to see another day.

And respite, what about respite? Good God, the difference it has made in such a short space of time. Because there is a block of time, every fortnight, when my beautiful boy goes off to Someone Else, life has changed immeasurably. I can plan fun stuff to do with Big (where *has* Big been in this post? Busily make-and do-ing, that’s what. Using my selloptape too). We have been to the beach, flown kites, had picnics, watched movies, eaten far too much popcorn and had breakfast in a slow, quiet way. I have been shopping with my Mum. OH has gone cycling guilt-free. For once.

I can see scary stuff on the horizon. SS wants to formalise our respite package. We don’t. My OT is bringing in a more industrial bed (a high/ low back-saving solution. ‘Honestly, when you put the cover on and loads of toys, you’ll never know it’s a hospital bed’. Really??) and a contraption to get Small into the Bath. We have to go and look at schools. But right now, this moment, it’s a good one.